The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Fatigue torture- how do you deal with it?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Dr.Patient, Jan 10, 2016.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

    Sometimes I take xanax and it helps.

    The mornings are just the worst.

    Any ideas...What do you guys do?
     
  2. Effi

    Effi Senior Member

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    hi @Dr.Patient this definitely sounds very recognizable. Btw, I stopped calling this feeling fatigue, because I think that word doesn't even halfway describe what this is. It feels like life is pouring out of you or something. All I can do then is rest and wait til it's over.

    The fact that you mention mornings as being the worst could be a pointer. Are you hydrated enough? I've heard people mentioning morning dehydration (causing low blood volume) as a cause of feeling awful in the morning.
     
  3. Mel9

    Mel9 Senior Member

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    Yes
    It certainly isn 't a nice sleepy relaxed tired feeling!
     
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  4. Bansaw

    Bansaw Senior Member

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    Hang in there friend. Theres always hope. Medical science is always advancing with new findings every year. One day they'll crack this.
     
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  5. Countrygirl

    Countrygirl Senior Member

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    Yes, I can relate to this too.It is horrible and you need to experience it to believe it. For me, it feels as though my major organs are just failing as there seems to be a complete energy failure. The worst is the effect on the heart as it feels as though it hasn't the energy to keep beating. As it worsens, the heart rate drops to about 30 a minute, and it feels as though it is really struggling. Horrible! I find that the best position is to lie on my right side, almost onto my front as it seems as though it isn't such a strain on the heart.

    I'm sorry that you are struggling with this too. :hug:
     
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  6. lnester7

    lnester7 Seven

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    Here is what I have learned and see if it helps you. I know we feel fatigue all the time but try to observe when does it get worse.

    I am going to assume you did the basic checks already: Vit D (the 2 tests), B levels, Thyroid (t3 and T4)....

    1) when you wake up is it bad? If so might be that u do not go to stage 4 sleep so try stage 4 inducer and see if that helps. See if you can get a sleep study, you have to point out to check for stage 4 (usually they only look for apnea).

    2) Does it get better when you eat or worst? If it gets worst try to eat chicken broth for a few meals and see if that makes you feel better (well done and with organic chicken) this is just to see if it is tummy related. If it is food related, there is a lot you can do, allergy test, digestive enzyme if needed....
    Another thing I noticed immune boosters killed me (equinacea tea puts me in bed for 2 days) Inmune mods made me feel better (acai). Foods that were vasoconstrictors made me feel better and food that would vasodilator would crash me.
    I would google food name+ immune booster, food name+ immune suppressor, or food name+ immune modulating
    also food+vassocontriction, food +vasodilator...
    If you cannot cook, try avocado with salt and lemon. That is good and no allergenisc. Check with your doctor.


    3) There are great supplements combo for energy to help: CoQ10 (as much as you need up to 1200mg) + this comes together (ALA 200mg+ acetyl l cartinine 500), 2 pills of this a day before 3pm + NAC 1000mg + D-ribose. I am not doctor this is just for you to have a start point for research, Some people say ALA is bad with fillings but I never had a problem.

    4) I get inflamed, so I do OTC Aleve every 6h (whatever the bottled instructions are) until I feel the inflammation gives (Is a feeling in the head). This is just so you realize if your issue is inflammation is not good to do long term but once you know if it is your issue, you can try to find the source (mine is the food allergies).
    Again ask your doctor before trying anything.

    5)If you are woman, the cycle influence, before my period I get tired and nothing I can do except wait it out.

    My point is if your base is a 3 or a 2. Observe what makes it a 1 or a 0. And what makes it a 4.

    If you have orthostatic intolerance (HR goes up 30bpm at standing) then Try midodrine or florinef (or they natural equivalents).
     
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  7. jimells

    jimells Senior Member

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    @Dr.Patient I know this feeling. I get it after a daytime nap, without fail. I try to avoid daytime naps, but sometimes I just can not stay awake. If I can get off the couch, a coffee helps a tiny bit. It takes hours for this "maximum malaise" to fade away. It is much worse than the way I feel when I wake up in the morning (generally I feel awful) - I can not imagine what is unique about a daytime nap that can cause this reaction.

    And I certainly identify with your sentiment that death would be a welcome relief during these episodes.
     
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  8. Hip

    Hip Senior Member

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    Are you sure it is actually fatigue that is the unbearable symptom you are suffering from?

    ME/CFS as an array of symptoms that can be very unpleasant:

    • the "wired but tired" feeling, where your mind feels greatly overstimulated (as if you drunk a 100 cups of coffee), but at the same time weak and tired.

    • generalized anxiety, where you feel huge mental tension and/or worry.

    • sound sensitivity, where normal environmental sounds can feel invasive and very disturbing to the mind.

    • emotional sensitivity, where even mild social discord that you witness can be quite unpleasant and create mental tension.



    In my case, when my ME/CFS was more severe a few years ago, I feel so much severe fatigue on some days that I felt as if all the life force was being drained out of me, and I was close to death. Of course you don't die of fatigue in ME/CFS, but it can feel that way when the fatigue is really severe.

    However, strangely enough, I always found the severe fatigue of ME/CFS a quite pleasant feeling, partly because you are so whacked and out of it that you don't notice your other horrible symptoms.
     
  9. Countrygirl

    Countrygirl Senior Member

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    I hate the wired but ti..............no...........I cannot bring myself to use the word 'tired' it is so inappropriate and in no way describes what we feel..................neither is the word exhaustion.......................is there a word in the English language that describes the feeling of complete battery failure?????


    :thumbsup:
    :thumbsup:

    Pleasant?? No!! :ill: I go with Dr Patient's 'torture'. It is very unpleasant indeed and a struggle to cope with it from minute to minute, especially as there is no chance of escaping into sleep.
     
  10. Apple

    Apple Senior Member

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    I feel this too. I know exactly what you are talking about. It's not just tiredness and fatigue, it's absolutely horrific. It's really hard to put into words. It's near unbearable and I can relate to the feeling of wanting to die during it. I literally can do nothing but lie there and sob.

    For me it's triggered a lot by a bad night's sleep. The only thing that seems to ease it is more sleep.. which can be near impossible, I know.

    Are you taking Amitriptyline by any chance?
     
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  11. Countrygirl

    Countrygirl Senior Member

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    Amitriptyline has caused some of us permanent damage, and wasn't effective anyway. It can also seriously aggravate our BP problems. Surmontil is much more sedating with some zopiclone thrown in.

    Baclofen is also a helpful drug and can make us feel so much better the following day.
     
    Last edited: Jan 11, 2016
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  12. Apple

    Apple Senior Member

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    I only take 5mg and I absolutely hate it. I'm suffering from severe insomnia due to my bladder waking me several times a night so I NEED something to help me get back to sleep and my GP won't give me anything else except other antidepressants which Is not a route I want to go down. . :-/

    Interesting that you say Baclofen, I was going to book an appointment to ask for that for bladder problems. Thanks :tulip:
     
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  13. Hip

    Hip Senior Member

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    In my case I drifted in and out of sleep the whole day long when I had severe fatigue. Fortunately I don't suffer from insomnia and inability to get to sleep (although I need to take melatonin, or else it will take me an hour or two to get to sleep).

    In fact, when my fatigue was severe, each 24 hours I was asleep around 12 hours during the night, and then probably asleep 6 to 8 additional hours during the day, drifting in and out of sleep.
     
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  14. daisybell

    daisybell Senior Member

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    When it's that bad, I find the only thing I can do is lie still and try to relax. My whole being feels like it is on the edge of giving up totally and you wonder how your heart can go on beating because your energy is so depleted. Sometimes I find that the pain and feeling of dread is causing me to tense up, so I try to focus on making sure that I am not expending a morsel more energy than absolutely necessary for survival. I work my way around my body, making sure all my muscles are relaxed, and try to calm my mind, hoping I might eventually drift off into sleep. God forbid I need to pee because there's no way I can get up to go at that time....
     
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  15. Invisible Woman

    Invisible Woman Senior Member

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    "Fatigue" and "tired" sound like quite passive and not necessarily unpleasant things. This couldn't be further from my experience..... it feels like a much more active/aggressive thing: like having the life force sucked completely out of you and you can almost "feel" your organs - esp heart slowing. I don't feel anxiety or anything like that with it. I just feel bloomin' awful. Can't stand/sit or move around or even speak really. Just have to wait for it to pass.

    The best way of dealing with it, for me, is to try to prevent it from happening which is pacing (i.e. staying within the envelope of what I can do) over a week or so -everything planned ahead. It will still happen but not quite so bad or so often or for as long. Still a horrible experience.

    Makes me think of the dementors in Harry Potter.
     
  16. Mel9

    Mel9 Senior Member

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    Never pleasant for me!
     
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  17. alex3619

    alex3619 Senior Member

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    Unrelenting exhaustion. That is what I would call it. Such exhaustion exacerbates sensory overload because (I think) the brain is too lacking in the energy to operate. I have lived there for years. Mostly I am not there now, but it returns briefly if I overdo things.

    Mostly its about cultivating patience for me. These things end. One nice thing about my really exhausted years, I have almost no memory of any of it. I think the brain gets too tired to properly form memories. Its that bad.

    I also find low energy distractions. The sicker I am, the lower energy requirements are needed for distractions. In the 90s there was one computer game I must have played 10,000 times. I can play it in my sleep ... or zombie mode.

    I have never been exhausted enough I was stuck in bed for long periods though. Only for short duration relapses or exacerbations. Like right now I would be in bed but I have support workers coming over. I am not forced to lie down, I just want to ... a lot.

    To my mind this much like surviving a concentration camp ... one day, one minute, one moment at a time. Its not about forever, just this next moment. I find this helps, though not consistently.
     
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  18. jimells

    jimells Senior Member

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    Haha, for me it is "Spider Solitaire". It keeps my fingers busy while I'm listening to another re-run on CBC Radio.
     
  19. Effi

    Effi Senior Member

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    FreeCell for me :rolleyes:
     
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  20. PatJ

    PatJ Forum Support Assistant

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    I get this as well but only during the day. It happens if I try to meditate, or if I don't keep my mind active. The best word I've found to describe it is 'stupor' ("a state of near-unconsciousness or insensibility.") except that stupor doesn't describe the terrible fatigue aspect.

    I can also start dreaming but I'm not really asleep. I think it's a sustained hypnagogic state where I don't properly fall asleep, but also can't stay properly awake: "Hypnagogic or hypnopompic hallucinations are visual, tactile, auditory, or other sensory events, usually brief but occasionally prolonged, that occur at the transition from wakefulness to sleep (hypnagogic) or from sleep to wakefulness (hypnopompic)." (from Google)

    I think it might have something to do with the parasympathetic system going overboard. If I try to meditate, or just sit or lie without active thought, I initially feel a balanced calmness but then I quickly go past it into the stupor. The longer I'm in the stupor the longer it takes to get back to normal energy and mental clarity (sometimes hours.) I try to avoid this state as much as possible.
     
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